I found this web site a few days ago. Although I had never been to a chat room before, I had recently been searching the internet for a chat room hoping to get more detailed information on some of the PC related issues that I was facing. I found several other mediocre chat rooms before lucking into this one purely by chance. It was exactly what I was looking for.

I started another thread in this chat room on a specific issue that I have wrestled with and I have also communicated on several other people's "topic" related threads. I see that many others have started their own "personal" threads which gives a place to update the community on your progress. I have decided to do the same thing here. I am looking at this thread as a kind of a journal of what I have been through and am now going through. I will try to periodically update it. Just talking about this stuff sure helps me get through all this. Maybe reading about (or discussing) some of my statistics and problems will help others as well. Let me know if you have questions or issues that I can help with. Others have been very helpful to me and I hope that I can "pay it forward."

Personal information:

AGE 49: I turned 49 in 08/06.

MARRIED: 20 YEARS. My wife is wonderful and tremendously supportive. I don't know how I would have gotten through all this without her.

CHILDREN: We have two wonderful daughters ages 13 and 15. They are scared but handling my cancer surprisingly well.

Here is my PC history:

PHYSICAL EXAM/ DRE / PSA:09/19/06: During a routine physical exam, my GP did a DRE and felt firmness on the right side of my prostate. He did a PSA which came back 4.6. He quickly referred me to a local urologist.

UROLOGIST #1: 09/21/06: I saw the local urologist who did another PSA which came back 4.2 and a free PSA which came back 2%. On the internet that evening, I learned that the 2% free PSA made it very likely that I had cancer. That was pretty much the moment that I was pretty sure that I had cancer.

BIOPSY: 09/25/06: I had a TRUS (trans rectal ultra sound.) It was uncomfortable but not very painful. The biopsy results came back positive for cancer on the right side with a Gleason of 4+4=8. When I read on the internet that a high Gleason like this indicates a more aggressive, faster growing cancer, I was stunned. My father died of intestinal (colon??) cancer in 1971 when he was 46 and I was 13. That is the same age as my youngest daughter.

PET SCAN: To check if the cancer had spread, Urologist #1 ordered a CT/PET scan. The PET scan was negative for any spread of cancer. I have subsequently been told that a PET scan was not a good thing to do for PC and a bone scan should have been done instead. In fact, my insurance even refused to pay for the PET scan.

CONSULT: We met with Urologist #1. He said that my cancer had been caught early and that it was stage T2a (all contained in the prostate) so it was highly curable. He reviewed the varous treatment options. He did not make a big deal about my high Gleason Score. I learned about that on my own.

RESEARCH: Once the shock wore off (or at least became managable) my wife and I did massive internet research, spoke to friends/family/church members who had fought PC, and read Dr. Patrick Walsh's book (which I highly recommend.) We ultimately decided upon surgery, largely due to the fact that it offered the possibility of a total cure as long as the cancer was completely contained within the prostate gland. We live in a small town and decided to seek a top doctor at a major medical center who had done hundreds of surgeries rather than stick with Urologist #1. After further research we settled upon a doctor at Johns Hopkins in Baltimore. This is halfway across the country from our home but I grew up only an hour from Baltimore and have family nearby. A big factor in my choice of Johns Hopkins was my desire to get the best possible outcome in terms of incontinence and impotence. Johns Hopkins has a top reputation for minimal side effects (in the long term - everyone gets them in the short term.)

CONSULT: 10/04/06: We met with my surgeon at Johns Hopkins. We had a long list of questions and he answered them. He also stunned us by telling us that it was a big error for Urologist #1 to have put me on Casodex since this had shrunk the prostate which would make it much more difficult to see during surgery and thus more difficult to spare the erectile nerves. Johns Hopkins did a second review of my biopsy and re-graded it as Gleason 10. We were again stunned by my bad luck. As if an 8 Gleason Score weren't bad enough, now I was a 10. I haven't even spoken to anyone else who has a Gleason 10. We were even afraid that we would be told not to do the surgery (Dr. Walsh's book discusses that possiblity) due to such a high Gleason Score. Fortunately no such issue was raised. We elected to use the open Radical Retropubic Prostatectomy procedure rather than the robotic / laproscopic procedure for several reasons. First, and most important, this is the technique that my chosen surgeon was most expert at. Another major factor was that, with my high Gleaon score, we wanted the surgeon to get the best possible vision and feel of my cancer so that he could get it all out. Finally, the robotic surgery had the feel of being "too new" and I wanted to stick with the more established tried and true technique. From what I have read in this chat room, I no longer have that concern and the robotic surgery sounds like a good option to consider. However, if you elect the robotic surgery, make sure that your surgeon has done a lot of them. Many surgeons are just learning this technique since it is relatively new. You don't want to be one the first patients while your surgeon is learning a new technique.

SURGERY: 11/08/06: We flew to Baltimore two days before the surgery and stayed six days after to reduce the rigors of flying home. The surgery went well although the doctor said that he could not tell if the nerves had been spared which was a big concern of mine.

RECOVERY PART 1: My surgery was Wednesday morning. I was walking very short distances Thursday around noon and was released from the hospital Thursday around 4:00 pm (30 hours after my surgery.) Thursday evening, back in my hotel room, I had considerable intestinal discomfort. I think that this was just from the bowels restarting / refilling. It was kind of like rumbling or gas but petty strong. This lasted about six hours. It was also medium painful to get in an out of bed due to the incision. That got better after about two days and was much better after about a week.

PATHOLOGY: POSITIVE MARGINS: A week after my surgery, my surgeon called with the pathology on my prostate. It showed that the cancer had penetrated the capsule of the prostate and that I had positive margins. This meant that my surgical stage was raised to T3a. This was precisely what the Partin tables had predicted (given my PSA, clinical stage, and Gleason score) but it was still very frightening. I had the dreaded positive margins. The good news was that no cancer was found in my seminal vesicles or in my lymph nodes. Although the cancer had escaped the prostate it did not seem to have gone anywhere. I have read (in Dr. Patrick Walsh's book I think) that any cancer left behind might die due to the lack of a prostate gland to support it or it might have been killed from the trauma of the surgery. Here's hoping. Still, I have read some statistics in Dr. Walsh's book that due to my high Gleason and positive margins I have about a 50% chance of recurrence down the road. I will have that hanging over me for the rest of my life.

CATHETER: 26 DAYS: The catheter was a big pain. It doesn't generally hurt but it is uncomfortable at times and it sure limits what you can do. I only left the house twice while I had the catheter in. Frankly, I just wasn't very comfortable being in public with a catheter bag hanging by my side. I was supposed to have the catheter out after 10 days but this was delayed to 26 days due to continued bleeding. It finally came out on 12/04/06.

RECOVERY PART 2: For the first 7-10 days ater surgery, I mostly just took it easy first in our Baltimore hotel and then back at home. A nice recliner is the best place to be. After the first 10 days, I was able to work at home sitting in my recliner using my notebook computer. I could work pretty much as long as I wanted each day as long as I mostly stayed in the recliner. I wasn't in much pain or tired. I returned to work at my office (I have an office job so I sit in a chair most of the day although I do get up and walk around our building quite a bit) after five weeks at home. The first week back, I was pretty tired and just worked half days. Since then, I have been back at work full time.

RECOVERY PART 3: As I write this, I am about two months post surgery. Other than one issue (bleeding) and two side effects, discussed below, I am feeling well. I am pretty much competely recovered from all the direct effects of the surgery (except some bleeding - more on that below.) I am walking 1.5 miles daily. I have lost about 15 lbs (on purpose before the surgery.) I feel very good physically. I have some down days emotionally. I think that will get better if/when my side effects clear.

BLEEDING: As mentioned above, I have had some bleeding from the surgery site. Of course, this happens to everyone for the first few weeks after the surgery but I think that I had more bleeding than normal and that it went on for longer. It mostly stopped about a month after the surgery although I continued to have a spot of blood on my pads one or two times daily for another month. Finally, two months after my surgery, I stopped my daily walks for two weeks and the bleeding stopped.

SIDE EFFECT #1: INCONTINENCE: After the catheter came out, I was incontinent. When lying in bed or sitting, I did not leak and I was was able to retain urine in my bladder. However, the moment that I stand up, my bladder empties. If I move quickly, I can reach the toilet before my bladder is completely empty and practice starting and stopping the stream which I can do pretty well. When I am up on my feet and walking I am constantly dripping urine and my bladder remains empty. I have been told that the fact that I can retain urine in my bladder while sitting and lying is a good sign. That is great but I remain very frustrated and disturbed by the lack of urine control. I am aware of this every moment of the day all day long. I am continuing to do kegels. Hopefully they will eventually help.

UROLOGIST #2: 12/15/06: PSA 0.00: Due to the PET scan and Casodex errors, we decided to find another local urologist and got some referrals. On 12/15/06 we met with Urologist #2 and he did my first post surgery PSA which came back 0.00. So far so good.

BONE SCAN: Urologist #2 also ordered a bone scan since one had never been done. It also came back negative. More good news.

That covers my diagnosis, surgery, and recovery for the first two months. More in subsequent postings.

As you can see by stats below, we're in a similar boat, although in a different age group. Our percentage of recurrence is high, but not enough to warrant any further treatment at this time, especially with an undetectable PSA count, which was our first "turn of luck" since last May. I was especially heartened to see your info regarding the possibility of cells dying out with nothing to feed on. We will remain encouraged with that.

We're scheduled for the next PSA in April and there will always be that dread. We think, though, that if the next one's clean, perhaps the worrying will subside somewhat.Husband age 65

I think that I read the note about cancer outside the prostate sometimes (frequently maybe - I'm not sure) not being able to survive without the support of the prostate gland towards the end of Patrick Walsh's book. That gives me back some of the hope that the high Gleason and positive margins took away. And, as you said, the best news of all is that our current PSA is 0.

I agree with you about not seeking out further treatment until it is more clear that it is needed. I have a 60 year old business acquaintance with similar stats to ours who, after his surgery, is doing chemo, hormone, and starts radiation shortly. I understand his desire to aggressively attack any possibly remaining cancer cells but I am having a hard enough time dealing with my side effects now. I sure don't want to bring on any more unless I absolutely have to.

Did you have a test done on 11/01/06 or something that caused you to note that there might be bladder neck involvement? I wondered why the 11/01/06 date was three months after your surgery date of 08/02/06.

I wonder why my (and your PSA) was relatively low and yet our cancer had still broken free of the prostate gland. That continues to baffle me although I am happier with a low PSA (at least one of my stats was low) than a high one.

I agree, this is a super post Ben! You certainly have a tallent for getting your thoughts across. Who was your Doc at Johns Hopkins if you don't mind me asking? I bet you will have your leaking stoped soon, it just takes time and practice. Keep doing the start stop drill while urinating, I really think that helps alot. As far as your other problem, I think your on your way if you are lasting longer than your wife, wow! Are you taking any meds that may be causing you to take so long? I have that problem with anti depression meds. For me, I'm not sure if thats a blessing or a curse??? Anyway Ben, I think your posts are going to help the many that follow us. It's a blessing you found us!!!! Keep up the good work. You are in my prayer my friend.God Speed,Pete53 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg.

Ben, we, too, were baffled about the incredibly low biopsy report. It was like a sledgehammer when we got the path report. There are probably two ways to look at it: it was very fast-growing OR the biopsy needles (12) just missed a big part of what they were intended to do. On 8/10, at the cath removal, our surgeon suggested some fatty tissue leakage. Our first post PSA was done just prior to the visit on 10/3. He declared it a non-detectable. That was after a month of knuckle-biting and expecting the worst. At that time, too, we had enjoyed two weeks post-cath of near dryness. Then, started gushing with walking. The doc put husb. on pills for 30 days and we scheduled a follow-up for 11/1.

At the 11/1 visit, he upgraded the recurrence to 30%-50%. I have to admit we sat there like bobbleheads, as we were still discussing the issues of incontinence, which seemed to be our big focus at that moment (and continues at the 5-month mark-dry when sitting/sleeping-leaking when up). I kicked myself all the way home for letting that one go.

I did question the doc on waiting until April for the next PSA and he "swore" to me that all would be well. We, like you, don't want to add any further issues unless absolutely necessary. Not for one minute did we regret the surgery - even if we had known of the spread, we would have wanted the prostate out first to know exactly what we're dealing with instantly. Luckily, we were good candidates for making that choice. For now, we will remain in la-la land about the change in predicted recurrence and keep riding on the .00000. I'll be drilling in on that one at our April visit.

This was a big lesson for us in being aggressive about questions and not letting those things slide - it won't happen again.Husband age 65

My surgeon at Johns Hopkins was Dr. Alan Partin. He is the head of urology department and came highly recommended.

FINISTERIDE: By the way, since this may be beneficial to others, I am going to take a quick moment talk about Finisteride. Finisteride in 1mg dose is called Propecia and is taken for hair loss. Finisteride in 5mg dose is called Proscar and is taken to help treat benign prostatic hyperplasia (BPH). Particularly in the higer 5mg dose, Finisteride can reduce your PSA by as much as 50%. I have read that if you take Proscar (not so sure about Propecia) you should double your PSA score. Although my current urologist assures me otherwise, I have wondered if my taking Propecia for the past six years has delayed the detection of my PC. I notice that my PSA has risen slowly to 3.8 about six years ago. When I started Propecia, it fell by 50% and then slowly rose again until it finally exceeded 4 for the first time in 09/06. I may just be second guessing here but this really leaps out at me now that I have learned so much and know what to look for. Also, at my age (early 40's then) a PSA of 3.8 should have triggered further testing. 20-20 hindsight.

You have created a wonderfully informative post of your PCa surgical experience. It will help many others as they go through this very freightening journey. You were very fortunate to have Dr. Partin as your urologist. He is certainly among the top rank surgeons in the world, and Johns Hopkins is the most respected hospital as well. I wish you continued good luck during your recovery, and I pray that you post nothing but "0" on future PSAs. Hopefully soon you will also become 100% dry; I was one of the average ones that took about 3 months to achieve 95%+ contienence. Now that it's been almost a year I'm 100% dry. So be patient, do your Kegels, walk as much as you can, and have faith that you will heal.

I got your message about Kegels on my thread but though I would answer on yours.

When the doc told me how to do the Kegels, I thought that it sounded like a lot of reps but it really isn't. It goes very easy once you get in the routine. They work for me. I miss doing them when I am at work or are very busy and forget, then I get to pay with a few small leaks when I strain or get really tired. That is why I put the adage at the bottom of my page....

QUICK REPRINT FOR OTHERS READING THIS: Jim's doctor said to do kegels as follows: Do 5 kegels per set holding each kegel for 5 seconds and then relaxing for 5 seconds between. Repeat 10 sets per day.

I really like your idea of doing them on the hour. This makes it easier to remember and if I miss several sets when busy at work, I can still do them on a different hour and still pretty easily hit 10 sets per day.

If nothing else, I at least feel like I am fighting the incontinence with this routine. Frankly, I have been getting so frustrated by my lack of progress that I have been tapering off the kegels which is counterproductive. Hopefully, this new routine will get me reenergized.

I am thrilled that you’ve started a Personal Journal to share with us.

With a Personal Thread…… Journal / Diary / Page…. We get a true understanding of where a person is or has been, where they are or have been, and where they are today, and where they are headed!!!!

**Individual Topic Threads are very important…. Definitely!!!! Journals let Newbies understand the individuals and see their path. And to me ~ that’s very important… as important as the individual topics.

You and I both posted at the same moment this morning (8:44 am central time) and somehow, as a result, I missed your post until just now.

I totally agree with you about the surgery. We remain convinced it was the right thing to do. Maybe we got all the cancer. If not, at least we gave it our best shot and still removed a lot of cancer cells.

I also completely agree with you about leaving the doctor's office and then realizing that you didn't get answers to all your questions. We have taken to trying to write down our questions before we even go. It is still hard to cover everything especially if the doctor introduces major new information into the discussion.

I am sorry to hear that you also are still battling the incontinence. This has been very frustrating for me but I am heartened to hear of other's successes. I am changing my kegel routine (see posting today three up on this thread.) Maybe that will help.

Hi, all. Ben, even when we know going into this what we'll be dealing with, it's still an emotional and intellectual struggle - after all, if it weren't important to us, we wouldn't be fighting so hard to get it back (i.e., incontinence, sexual function).

So, we've been experimenting with NOT doing kegels (don't anyone shoot us), because I thought maybe it was a matter of "overdoing." Jim, did your doc tell you to do that many repetitions after surgery? (I'm going to hunt down your thread in a minute.) Husb. had been 2x/day religiously since post-cath. We know (from a comment from Kay), that it will certainly resolve itself within the year. Unless, of course, we're in that 1% category that never regains continence - and we joke about the fact we've been in 100% of every bad category to date.

My doc told me about the Kegel routine on the day he took out the catheter. (He told me once, then shook his finger in my face and told me again.) I had continence after about 8 hours on that day but am still doing the excerises after 5 weeks post-op.

One day I doubled them thinking that if some is good, a lot more must be better. I ended up with a wet bed that night. It sounds like a lot of reps but spread out over the day, it really isn't. I never feel any strain and stay constantly dry.

We are all different and recovering continence and potency seems to require us to tailor our routines to our own situations. I believe that the one common element that we all require is a positive attitude, believing that we will recover.

I'm a couple of years older than you and Partin was also my surgeon. Had RRP on 2 Aug. 06. The time to regain continence is different for everyone. However, sounds to me you are making progress. Soon you will be fully continent. You just have to have patience. Regarding ED, again sounds like you are making progress. If you were able to achieve 50% erection within two months of surgery, rest assured Dr. P saved your bundles. Takes most people a lot longer than that to regain potency. This aspect will only get better in time.

The number one goal of surgery is cancer cure. I'm impressed with your post surgery PSA of <0.1. Be sure to send your three month PSA to Dr. P. I'd say the most important thing you need to do is follow your PSA closely and any change should be reported to Dr. P. His nurse, Robin, is a great source of quick information if you have any future questions or concerns.

Thanks for your comments. It is nice to hear from someone who has been down the exact same road and is three months ahead of me. I know that incontinence will get better but it sure is frustrating while I wait. As my wife says, I was very patient for about 30 days after the surgery. After that, my patience was exhausted.

I have been continuing to research the implications of a my high Gleason and positive margins. From what I have studied, it sounds like my chance of recurrence within 7 years is 50% or more.

I am confused by the conflicting information that I have heard about whether it is better to go ahead and start immediate radiation and/or hormone treatments in the near future even with a 0 PSA right now or is it better to wait until my PSA increases (maybe it won't increase for years or even never.) I have heard that the sooner you start follow-on treatment the better the odds of killing the cancer or at least slowing the advance of any future recurring cancer and thus extending my life. On the other hand, I only have a chance of recurrence vs. the certainty of damage and side effects from the radiation and hormone treatment. What a terrible decision to force on someone. This disease absolutely, positively, stinks.

Does anyone have any thoughts on this subject or know of useful reference books or internet sites?

It is depressing to even consider the fact that I may not be done with this thing.

---Heal as much as you can before doing anything more. 0.00 is worth waiting a short while IMHO but you have to do what is right for you.

---If you can get a year...maybe forever without further treatment, that would be a wonderful blessing. Somebody has to be that 50%! If indeed your cancer has spread, it'll show its face within months most likely.

---I know there is a protocol being used that takes a high risk case and slams it for something like 18 months with hormone deprivation and or chemotherapy. So far there is some promising early results.

Get into the archives of Entrez PubMed @www.ncbi.nlm.nih.gov or prostateline.com.....There are thousands of articles and abstracts that might help. IMO...and that's all it is; if it does reappear early, it won't be locally advanced therefore not going to be helped much by localized radiation. IF however the rise does occur (if its going to that is)more than 2- 3 years down the road then most likely the spread is local, not systemic. 0.00 may only last a year, it might last forever. So far 0.00 still means no cancer is detectable!!!

Sometimes I just get a bit overwhelmed by all this. It is bad enough to have PCa but to also have a high Gleason and positive margins just stinks.

Yesterday was a very low day for me. In fact I got so worked up, I woke up light headed and dizzy and had to take a sick day today.

I am doing better this afternoon both physically and emotionally.

I will look at the websites that you suggest. I need to start doing more research on the advisability of additional followup treatment but I have put it off out of fear that I might learn that additional treatment is the best course of action. Of course, if I need it, I will do it but I don't WANT it.

Thanks for your kind words both now and over the past few weeks. It helps both to put my thoughts into words and to hear back from others.

I understand your concern. If I were in your shoes, I would consult with the folks at Hopkins. You're Dr. Partin's patient. He's got the knowledge to give you the most authoritative advice than anything you can find on the internet. That's why we both went to him in the first place.

You are right about following up with Dr. Partin. I will probably wait, do a three month PSA as he asked (about a month from now), and then follow up with him after that.

I have found it a bit difficult to followup with him (mostly Robin actually) over the phone. Somehow it seems more rushed than an office meeting. It feels like I can't get more than 5 minutes of their time.

Thanks so much for this comprehensive, informative post. Extremely helpful to read as many experiences as possible while going through this.

I have one question, you said:

He also stunned us by telling us that it was a big error for Urologist #1 to have put me on Casodex since this had shrunk the prostate which would make it much more difficult to see during surgery and thus more difficult to spare the erectile nerves.

First, not aware of what Casodex is? So was wondering what that was for.

Second, main reason I am asking about this part of your post, is that Ken went on Avodart when first diagnosed to shrink the prostate (Ken had enlarged prostate though 73 ... not sure if yours was enlarged?). Anyway our robotic guy felt and thought the prostate had shrunk to 30-38 by feel and that was a GOOD thing and made it a shorter, easier procedure?

We haven't gone through surgery yet, but when I read that experience of yours got a little concerned. But maybe it is because yours was normal and then shrunk below that or maybe a difference between open and robotic? I don't expect you to necessarily know, but if you or anyone out there has insight on this would be appreciated.

This is a heck of a ride Ben. I guess we've all had more fun. You are obviously an intelligent man and one way, or another, I expect you to prevail. Sure wish none of us had to experience the misery, though.